Migraine Australia is doubling down on the fight for equality in medical care on the inaugural 'Burple Day' to raise awareness of migraine.
Migraine Awareness Month is held in June each year. It is the major annual awareness activity of the global migraine community with over 35 countries conducting activities throughout the month. Migraine Australia, the only patient body supporting Australians living with migraine, has led the month of activities each year since bringing the event to our shores in 2020.
Burple Day was added to the activities this year to make it easy for everyone to show their support for the five million Australians living with migraine by simply wearing anything burgundy or purple on the first Friday in June, June 7.
Migraine is a complex genetic neurological disorder that has a wide spectrum of presentations. Symptoms of migraine attacks are diverse, ranging from from nausea, dizziness, and fatigue, through to stroke-like hemiplegia and significant gastrointestinal upset. Severe headache is common, but some do not experience headache at all. Each person living with migraine has a slightly different combination of symptoms, triggers and treatments.
1 in 5 Australians live with some form of migraine disorder, with working age women the most affected by frequent debilitating migraine attacks. It is one of the most prevalent disorders in the world, and one of the least understood due to almost no research grants or other funding being directed towards migraine.
Founder of Migraine Australia, Dr Raphaella Kathryn (RK) Crosby, says migraine doesn't get its fair share of health services and funding because of the myth that migraine is 'just a headache'.
“The ‘just a headache’ stigma is really challenging, and routinely stops people with migraine from getting the care and support we need.
“Migraine is a genetic, life long condition, that makes your brain work differently. It isn’t a headache - and a headache, no matter how severe, isn’t migraine, it's just a common symptom,” Dr Crosby said.
A wave of new medications in recent years based on breakthrough science have been life changing for many. Unfortunately, most of them are cost prohibitive as they are not on the PBS. Three preventative treatments are only available on the PBS for those significantly debilitated by migraine who have failed everything else and are under the care of a neurologist.
“As an organisation and a community we really struggle with how hard is to access care.
“Finding a GP who takes you seriously is hard, getting referred to a neurologist is hard, and then you have to jump through hurdles, forced to take medication for blood pressure and depression, before you can have access to treatments that work," Dr Crosby said.
Dr Crosby said the organisation has recently begun to ramp up for a renewed fight to get two medications - Nurtec and Aimovig - on to the PBS. Nurtec, made by Pfizer, is the most promising medication of this new class that may be able to help the most people because it can be taken preventatively or acutely. It was approved by the TGA last year but was rejected from the PBS. Aimovig was the first in class of these new medications and was rejected by the PBS several times in 2019, but Migraine Australia has never given up hope of getting Novartis to try again.
Migraine Australia has been lobbying for these medications to be added to the PBS for years, and rejects the excuse given that these medications cannot be listed on the PBS because the number of patients, and therefore cost to the budget, is "high and uncertain".
"We understand that migraine is a challenge for the health system because there are so many of us, but we shouldn't be denied adequate access to health care because our medical condition is common.
“We also know that getting the government to take us seriously starts with the community understanding we aren’t talking about headaches,” Dr Crosby said.
"As we rally for another fight to get these remarkably effective new medications on to the PBS, we really hope the community will support us in asking for a fair share of health care."
All Australians can show their support for people with migraine by wearing burgundy and purple on Burple Day, Friday June 7, 2024.
More details are available from the Migraine Australia website www.migraine.org.au
____
Information about the medications and treatments available for migraine
-
There are acute medications – called ‘abortive’ or ‘rescue’ medications – such as Triptans which stop a migraine attack if taken just as it starts. Triptans were made available over the counter at the chemist (downscheduled from schedule 4 to 3) in February 2021. They are in small packs and unreasonably expensive for most people.
-
Historically there have been few effective preventative treatment options. For those with severe and frequent attacks, 35 or more injections of Botox around the head and neck every three months by a neurologist has been available on the PBS since 2014.
-
Recently new migraine-specific preventative medications have become available. There are six currently approved by the TGA: Aimovig, Emgality, Ajovy, Vyepti, Nurtec and Aquipta.
-
Aimovig was the first of these new medications. It was rejected from the PBS twice and withdrew its third application in 2020. The PBAC found Aimovig to be cost effective and clinically effective, but rejected the application because there are too many migraine patients. Aimovig costs $695 every four weeks.
-
Emgality was listed on the PBS for a very limited group of patients in 2021. Other patients on an access program are currently paying $263 a month for their medication.
-
Ajovy was listed on the PBS for a limited group of patients in 2021. Patients on an access program are currently paying $299 a month for their medication.
-
Vyepti was listed on the PBS in 2023, but as it is delivered as an infusion there are additional costs and it is challenging to access to this medication.
-
Nurtec was approved by the TGA in 2023, but rejected by the PBAC for listing on the PBS. This is the first tablet medication in this new class and has the largest potential number of patients that could benefit. We understand Pfizer will be applying again. GPs can prescribe this medication, but there is no access program, and the price at the pharmacy is around $250 to $300 for 8 wafers (or $37.50 per dose).
-
Aquipta was approved by the TGA in 2023 but rejected from the PBS. AbbVie says that they will not be bringing this medication to the country without PBS listing, so this medication cannot currently be accessed in Australia.
-
-
There are more new abortive and preventative medications, including Ubrelvy (made by AbbVie, has Serena Williams as a brand ambassador) that are not available in Australia yet.
More information about CGRP medications: www.migraine.org.au/cgrp
Please report on migraine using the right terminology!
Consult our language guide at www.migraine.org.au/language
Key Facts:
Migraine is a genetic, incurable, neurological disorder causing significant invisible disability.
Migraine is very common - it is estimated 4.9m Australians live with migraine, 1 in 10 men and 1 in 3 women. Working age women are the most significantly affected, with up to 45% of women between 25 and 45 experiencing migraine attacks.
Migraine costs the Australian economy an estimated $35b a year, mostly in health and welfare system costs and lost productivity.
In simple terms, having migraine is having a hyper-reactive brain (or more specifically hyper-reactive dysfunction in sensory processing). When exposed to too much of something or ‘triggered’, our brain overreacts and creates a ‘storm’ of peptides and other chemicals which naturally occur in the body. This overload of activity causes the ‘migraine attack’ or the physical symptoms such as light, noise and sound sensitivity, nausea, and a severe pulsating headache.
Migraine is not just a headache, nor is the term ‘migraine’ synonymous with ‘bad headache’. There are many other symptoms, and some do not experience headache at all.
Burple Day is named because the awareness colours for migraine are burgundy and purple. People are asked to wear burgundy or purple on the first Friday in June to show their support for the five million Australians with migraine.
CGRP stands for Calcitonin Gene Releated Peptide, which is a natural chemical that surges during a migraine attack.
About us:
Migraine Australia is a registered charity and the only patient body representing Australians living with migraine. Migraine Australia is run by a volunteer board and over 100 volunteers make our activities happen. There are currently no paid staff of Migraine Australia and we rely on donations to fund activities. Find out more at migraine.org.au
Contact details:
Raphaella Kathryn Crosby
0412 025 601
rkc@migraine.org.au
Images and audio grabs available here Migraine Awareness Month 2024 Media resources
